Caring for the Caregivers

Feb 17, 2016 1:00 AM

Author:
Julie Kiefer

A new report from the National Health Aging Trends Study and National Study of Caregiving shows that over six million people in the U.S. provide extensive care for loved ones with dementia but only one-quarter of them access supportive services. Also according to the report, such services are badly needed. Caring for someone who is on the decline not only takes an emotional toll, but also impacts a caregiver's productivity at work, and causes financial difficulties.

The news comes as no surprise to social worker Liz Garcia-Leavitt, MSW, LCSW, Health Educator for the University of Utah Center for Alzheimer’s Care, Imaging, and Research. The center, which celebrated its tenth year with an Open House yesterday, was built with the well being of not only patients, but also caregivers, in mind. Ten years later, the center is still the only interdisciplinary specialty clinic in the Mountain West dedicated to treating cognitive impairment.

“Alzheimer’s is a journey; life does not end at diagnosis,” says Garcia-Leavitt. “We help families realize there is a new normal. We have resources and different ways to help with each individual situation.”

For a caregiver of someone just diagnosed with the condition, it may start with helping that person to realize that they can’t do it all. Garcia-Leavitt and the other health educators mobilize a patient's family and extended social network to assist with care, giving the primary caregiver respite to make it through the long haul. They also connect patients and caregivers with support groups, educational materials, means for keeping finances in order, and fuel them with ideas for keeping active.

For someone in advanced stages, health educators make sure the family is aware of advanced directives, and help loved ones come up with a Plan A, Plan B, and Plan C, to anticipate changes that may come their way. “We’re advocates of being proactive, not reactive,” says Garcia-Leavitt.

But these conversations are hard to have in more ways than one. Because of their sensitive nature, caregivers often request that the patient not be present. The problem from the perspective of the clinic is, who do they bill if the patient is not there? With support from the Daniels Fund, CACIR has been able to expand their health education and family support services.

The family support provided by CACIR has made all the difference to the Payzants. Ellen Payzant is the primary caregiver for her husband Tom, who was diagnosed with Alzheimer’s two years ago. “Anything you need or want is at your fingertips, and it’s helpful to know I can talk to someone at anytime,” says Ellen. “It’s a wonderful comfort that I’m sorry more people don’t have.”

The approach has been so successful that the University of Utah Health Care geriatrics, Huntington’s, and Parkinson’s outpatient clinics are following CACIR’s lead. “New approaches of proactive and individually sculpted care incorporate a plan for family support,“ says Norman Foster, MD, director of CACIR. “Our vision is to enhance self-determination and maximize the independence of our patients and their caregivers.”

Julie Kiefer

Julie Kiefer, Ph.D. is the Science Manager for University of Utah Health Care. Follow her on Twitter @JulieCKiefer.